Deaths of wandering autistic kids spark alarm, calls to action

Rescue personnel in a boat use an underwater device in the Red River in between East Grand Forks, Minn. and Grand Forks, N.D. on Thursday afternoon, Aug. 8, 2013 to search for 11-year-old Anthony Kuznia who went missing from his East Grand Forks home on Wednesday afternoon. The body of the autistic boy was found Thursday in the Red River. The phenomenon goes by various names - wandering, elopement, bolting - and about half of autistic children are prone to it, according to research published in 2012 in the journal Pediatrics. (The Grand Forks Herald, Jenna Watson, AP Photo)

The 3-year-old girl wandered away from her grandmother’s home in Wareham, Mass., in mid-April. A frantic search began almost immediately, and within an hour little Alyvia Navarro was found unresponsive in a nearby pond. She was pronounced dead the next day.

A month later, across the continent, a larger search unfolded over three days as hundreds of emergency service personnel and volunteers fanned out around Clearlake, Calif., looking for 9-year-old Mikaela Lynch after she vanished from her backyard. The outcome grimly echoed the Wareham search: A dive team found Mikaela’s body in a muddy creek.

The two girls were the first of at least 14 children with autism known to have died this year after slipping away from their caregivers. All but one of them drowned, evidence of a fascination that many autistic children have with water. The body of the latest victim, 11-year-old Anthony Kuznia, was found Thursday in the Red River after a 24-hour search near his home in East Grand Forks, Minn.

The tragic phenomenon goes by various names — wandering, elopement, bolting — and about half of autistic children are prone to it, according to research published last year in the journal Pediatrics.

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That would be a huge number. The Centers for Disease Control and Prevention estimated last year that 1 in 88 children are affected by autism, and a federal survey this year pegged the prevalence rate at one of every 50 schoolchildren — more than 1 million children in all.

Wandering has led to the deaths of more than 60 children in the past four years, and the fear of it can make daily life a harrowing, never-let-your-guard-down challenge for parents.

“We take steps at home — locks on every door, gates, alarms,” said writer Jo Ashline of Orange, Calif., whose 11-year-old son has autism. “But there’s always, in the forefront of our minds, the thought that one tiny mistake could prove fatal.”

Groups that advocate for autism-affected families, including the National Autism Association and Autism Speaks, are now making it a priority to increase awareness of wandering — among parents, professionals who deal with autistic children, and first-responder agencies that handle missing-children cases.

The study in Pediatrics found that half of parents with autistic children had never received advice or guidance from a professional on how to cope with wandering.

Among those trying to change that is Sheila Medlam of Colwich, Kan., whose 5-year old son, Mason, drowned in a pond in July 2010 after squirming out of the family home through a window that had been raised about 8 inches because the air conditioner went out.

Medlam was at work; her adult daughter was at home but didn’t see Mason’s getaway.

“It only takes a second of inattention and they’re gone,” Medlam said in a telephone interview. “They’re fast, they’re quiet. They can disappear in an instant.”

Medlam now works with autistic children, operates a website that keeps track of wandering-related deaths and lobbies for a national alert system that would improve emergency responses.

On her website, she has written a wrenching account of the day Mason died — blaming herself for leaving the window open and for omitting potentially helpful details when she called 911, and blaming the first responders for lack of knowledge about how to search for autistic children

“If only I could redo that day and just change one thing. But I can’t,” Medlam wrote. “All I can do is point out the mistakes I made, the mistakes others made, and the lack of resources that claimed my child’s life and ripped him from my arms forever.”

Boys and girls with autism aren’t the only children who stray from caregivers, of course, but their wanderings pose distinctive challenges.

While autism encompasses a spectrum of disorders, posing a range of developmental challenges, experts say the wanderers are often among the more severely affected. They often have minimal concept of danger, don’t readily absorb safety lessons, and have limited ability to communicate with others.

And once on the loose, they often make a beeline for a destination of interest that proves fatal: a busy highway or a body of water. Lori McIlwain, executive director of the National Autism Association, says about 90 percent of the wandering fatalities in recent years have been drownings, and most of the other victims were struck by cars.

McIlwain, who lives in Cary, N.C., says her own son, Connor, wandered away from his school in 2007 and might well have ended up in danger had a concerned motorist not stopped and picked up the boy after getting no response to some questions.

In the ensuing years, McIlwain said, it’s been a constant challenge to teach her son how to keep himself safe.

Still, the fear that he’ll bolt remains “what we live with — it doesn’t go away,” she said.

Precautionary measures recommended by experts include locks and alarms on doors and windows, “Stop” signs placed in key locations in the home, and ID bracelets or tracking devices worn by the child.

Other recommendations from the National Autism Association include:

• enrolling the children in swimming lessons, such as those offered by the YMCA for special-needs pupils.

• developing a family emergency plan to be used in the event of a wandering incident.

• informing local emergency services, trusted neighbors and staff at the child’s school or day-care center about details of the child’s interests and wandering patterns.

Even after taking such steps, many parents nonetheless sleep in their autistic child’s room to avert a nighttime getaway. McIlwain knows a mother who takes away her daughter’s shoes when they’re home as a deterrent.

Lauri Dupree of Lumberton, Miss., says she and her husband, who are raising their 6-year-old grandson, Boo, have resorted to using a harness during outings and even sometimes at home because of his daily attempts to bolt.

“He has always done this since he learned to walk and has come close to losing his life on several occasions,” Dupree said.

Jo Ashline describes her home in California as resembling Fort Knox with its array of security measures.

“There’s always that state of worry — is he going to get out,” Ashline said of her son Andrew. “As he gets older and taller, are we going to be able to outsmart him? It only takes one time for him to outsmart us.”

She and her husband — like many other parents in their situation — shy away from travels and vacations that might expose Andrew to new opportunities to get away.

“The world itself became our greatest nemesis,” Ashline wrote on her blog. “Places most families treasure such as parks, beaches, backyard swimming pools and campsites became staging grounds for our imaginations’ worst nightmares.”

Indeed, several of this year’s wandering victims were on vacations or family outings — including a camping trip in Ohio and a beach vacation in Florida.

Even festive gatherings at home can be dangerous, according to Bob Lowery, executive director of the missing children division of the National Center for Missing and Exploited Children.

“The backyard barbecue is probably the most unsafe place to be,” he said. “Everyone assumes someone else is watching that child, and they slip away unnoticed.”

To avoid that outcome, he said, some parents develop elaborate hand-off systems to try to ensure an adult always has their eyes on the child.

Over the past few years, Lowery’s organization has intensified efforts to increase awareness of the wandering phenomenon and improve the way emergency services and search-and-rescue teams respond.

For example, the people who field 911 calls are being encouraged to obtain specific information from the caller such as whether the child is attracted to water, so that searchers can immediately deploy to local ponds or rivers.

“We know that if there’s a tragedy with a child with autism, it probably will occur very quickly,” Lowery said. “They have a tendency to head straight to water if that’s what they want — you need every able-bodied person available to get to water as soon as possible to head them off.”

Lowery and his colleagues, as well as many advocates for autism-affected families, have been exploring ways of developing a national alert system tailored to deal with wandering incidents. He said the existing

Amber Alert system is not an option — it’s limited to cases where a child is believed to have been abducted by someone who poses a danger to them.

One option being looked at isProject Lifesaver, launched in 1998 to help search-and-rescue teams find missing people with Alzheimer’s disease, dementia, autism and Down syndrome. Funding is an issue, however: For the program to function, the people at risk of wandering must wear transmitter bracelets and emergency services must have appropriate tracking equipment.

The driving force behind the recently published research on wandering was the Interactive Autism Network, a program headed by Dr. Paul Law at the Kennedy Krieger Institute in Baltimore.

Law says he is encouraged that people in the autism community and beyond are now talking about the phenomenon.

“Up ‘til now it’s been a silent problem,” he said. “Everyone was expected to deal with it on their own. They didn’t talk to their doctor; parent groups didn’t talk about it.”

He said parents coping with the challenges of a wandering child deserved public understanding and support.

For many parents, there’s damned-if-you-do, damned-if-you-don’t aspect to the nonstop need for vigilance. Some are criticized for turning their homes into fortresses and minimizing their autistic child’s contacts with new environments. Yet when a wandering-related death occurs, the parents can incur harsh criticism in social media, including aspersions that they were negligent.

Lori McIlwain, in a blog posting, denounced such criticism as “cruel and heartless.”

“It’s easy to place blame. It’s easy to judge,” she wrote. “It’s difficult to be accurate unless you’ve been there.”

Jo Ashline made a similar plea on her blog.

“We respectfully request that you refrain from the judgment that is so prevalent among those who have never chased down a defenseless child, who have never woken with the sick feeling that a door or window was maybe mistakenly left unlocked, who have never felt the dread of realizing that in a split-second, the entire world can come to a screeching halt.”